Where parenting and Asperger's Syndrome meet

Month: November 2016

I consider myself a reasonably intelligent fellow. I have a Diploma of Higher Education, two Bachelor’s Degrees and a Master’s, and got a distinction for each. And they cover some pretty dry subjects, too: the history of science and technology, history of medicine, the psychology of violence, English language, linguistic and representational philosophy, psychoanalysis, criminology, imperialism, archaeology, urban development, and the history of warfare, with a smattering of classics, film history and creative writing thrown in for good measure. I find it pretty easy to switch between arts, humanities and social sciences and by the measure of society, it is not a stretch to describe me as academically gifted.

The thing with academic intelligence, however, is that it doesn’t necessarily translate well into the ‘real world’ of feelings, relationships and social interaction, particularly when you have autism. The other day, for example, I was trying to explain to someone how, if a person talks in a loud voice and uses expressive hand gestures, I interpret this to mean that they’re angry (this was a subtle way of asking her to lower her voice and keep her hands inside the vehicle at all times, but it fell on deaf ears).

Well, yes, I know on an intellectual level that they’re not angry, just loud, but this actually changes nothing because my instinctive understanding is that they are, indeed, angry, and my physiological reaction is the same as if they were: my fight or flight mechanism kicks in, I get flooded with adrenalin, my hackles rise, and everything in my body acts as though I’m about to be attacked. That’s not something I can intellectualise away.

It is this difficulty interpreting or understanding another’s emotional state which makes people tell me that, as a person with autism, I am unable to empathise. And despite my broad education and academic intelligence, I have to admit that I’m really struggling to work out what this concept called ’empathy’ actually is.

The reason I’m wondering is because I have, of late, been incredibly emotionally fragile, which I have detailed in another post. I spent the most awful few weeks of my life crying over a little girl I’d never met called Jessica Whelan, who was dying of neuroblastoma. Something about the story touched me very deeply, and I internalised so much pain and sorrow that it was as if my own child were dying. I cried all day, every day. I could barely function, every day waiting for the news that she and her family had been released from their suffering.

When she finally passed, I had one last almighty cry and started to feel better. Instantly, the past few weeks started to feel weird, as if I had been in a fugue state. They have a funny colour in my mind (I associate things with colours in my head) – those weeks were yellow ochre, everything yellow ochre, when my world is normally pale blue. It was as though someone or something else had taken over me. I was an emotional wreck for weeks, just wasn’t myself at all. It was as if there was a ‘before’ and an ‘after’, and the inbetween was something else.

Describing this to people, they’ve said things like, ‘That’s because you’ve never felt empathy before’, or ‘you’ve never been able to empathise’, or ‘I thought people with autism couldn’t empathise’, or ‘as someone with autism, you’ve never had to learn how to deal with emotions when you empathise with people’. In fact, every single person I’ve spoken to has used the word ’empathy’, or a derivative of it, and this is what has me flummoxed: just what the hell is empathy?

As I have always understood it, sympathy is when you feel for someone, without internalising their pain, while empathy is when you feel with someone, taking on their viewpoint and experiencing their emotions for yourself. As an illustration of the distinction, one of our chickens died the other night. I thought it was a shame, but that was about it. When I told my wife, however, she cried for half an hour. I sympathised with her, in that I recognised she was in distress and tried to help by making her a cup of tea (that very British panacea), but I didn’t empathise with her because I didn’t feel the same emotions (i.e. I did not get upset and cry with her). Seems pretty straightforward.

But really, it’s not. When that little girl was dying, why did I feel such pain, and for whom, and in what way? I couldn’t bear that she was suffering and dying, so does that mean I was feeling for her (sympathising) or feeling with her (empathising)? Or was I doing both simultaneously? Or, in fact, neither? Because much of my pain was the result of imagining it was my child suffering and dying, does this mean I was actually empathising with her parents, by adopting their viewpoint and experiencing their pain? (Which seems a little arrogant, because how could I possibly experience the pain of losing a child without having done so?) Or was I simply imagining my own pain at the possibility of losing my own child, which means I wasn’t actually empathising at all but was indulging in a selfish, masochistic grief-fantasy?

This is what is confusing me. Being autistic, I tend to approach my emotions from an intellectual viewpoint in an attempt to understand them and regulate them, and maybe I’m thinking too much into it, but I can’t understand how a person could ever be said to empathise with another. How can a person experience the feelings of another, or understand their viewpoint? We are all different, and we think and feel differently, and it would be presumptuous in the extreme for someone to think they know, understand and echo how I am thinking and feeling. Surely when we ’empathise’, what we really mean is that we are using our imaginations to think how we would feel in a given situation, so instead of feeling someone else’s pain, we’re feeling our own (imagined) pain?

If this is the case, then it is wrong to say that people with autism cannot empathise, because we can certainly imagine how we would feel in a given situation and project that feeling onto the situations of others. Indeed, if we could not do that at all, we would fit the criteria for psychopathy, and people with autism are clearly not all psychopaths. I think the belief that people with autism cannot empathise stems from our inability to accurately interpret the emotional cues of others in interpersonal communication – if we cannot work out another’s emotional state, such as thinking they’re angry because they’re loud, how can we match emotions (empathise) with them? It is therefore a problem with social communication, and not an emotional disability.

On the other hand, if we bring in the idea of personal distress, which is seen as a subset of emotional empathy, this could answer what is going on in the autistic mind. Personal distress is a notion in psychology where witnessing the suffering or distress of others triggers anxiety, pain and distress in yourself, so rather than truly empathising with the sufferer you have a self-centred emotional reaction to their suffering. Essentially, it makes you uncomfortable because you don’t understand it or know how to deal with it. Arguably, this is what happened to me over the past few weeks – I saw someone in distress and it made me distressed, saw someone suffering and accordingly suffered. Indeed, people with autism apparently have much higher levels of personal distress than neurotypicals, since it’s a self-centred, immature version of empathy (and it’s questionable whether it’s a form of empathy at all). And given that one response to being oversensitive to the suffering of others is to withdraw from the source of this discomfort, this is another reason we are seen as unempathetic.

I think the truth of the matter is somewhere in between all this theorising. Yes, Jessica Whelan’s distress, and that of her parents, caused me great personal distress, making mine a self-centred, unempathic response. At the same time, however, I put myself in the place of her parents and, using my own daughter as a frame of reference, empathised with their pain. In addition, I sympathised with their predicament. And I pitied them. And I felt compassion for them. And for a few weeks cried all day, every day.

I think that is the important thing, the thing to remember. Regardless of what words we use to describe or define it, the thing to take away from this experience is that, for whatever reason, Jessica Whelan pierced me to my very core, exposed something I’d never felt before, and reminded me how important it is to make the most of each day that we get to spend on this earth with the people we love. I may struggle to understand empathy, but the pain I felt was real and profound.

The oddest thing I’ve ever experienced happened this afternoon. I’ve spent my life hoping to encounter something supernatural that I couldn’t dismiss out of hand as the result of some highly improbable yet entirely possible set of circumstances, and I very nearly got it today thanks to my psychokinetic child.

The facts of the matter are these: My mother-in-law treated us to pizza for lunch. Lizzie, my wife, drank a glass of Coke during the meal. While we were waiting for the bill, my daughter leaned over and lightly touched the empty glass with her fingertip. And the glass literally exploded.

This is one of the few occasions in which the word ‘literally’ is used accurately, because we’re not talking a slight cracking here, no; we are talking about an incredibly loud bang that shattered the glass and sent a thousand razor-sharp fragments flying in every direction across a circle with a diameter of six feet, one of which cut open my mother-in-law’s finger, but luckily left the rest of us untouched. Bewildered, confused and a little bit apprehensive, but unharmed nonetheless.

It didn’t sound or behave like a glass on a table top falling over and breaking, and nor did it sound or behave like a glass being knocked off a table to smash on the floor. Instead, it sounded and behaved like a glass being dropped onto a table from the ceiling. Every conversation in the restaurant instantly died as fifty diners turned as one to work out what could have caused such a violent breakage. A waitress who saw it happen was shocked and seemed wary of approaching the table, casting sideways glances at my daughter as she helped us clear up.

My first thought was that somebody had shot the glass, such was the energy of the explosion. My second thought was that my child has psychokinetic powers and released a burst of energy that shattered the glass. As I said, it was the weirdest thing I’ve ever experienced.

Alas, being something of a sceptical rationalist, a saner head started to prevail. The glass had contained ice, which caused it to contract; as the restaurant was on the quayside at Portsmouth, the sun reflecting off the sea and pouring in through the window caused the glass to expand; and the resulting tension between these two opposing thermal forces created a wellspring of potential energy awaiting the tiniest impetus to release. When my daughter touched the glass with her fingertip she exerted just enough physical stress to trigger all the pent-up tension, which caused the glass to explode. Nothing supernatural or special. Unusual, granted, but not beyond the realms of scientific possibility.

Damn it.

So I won’t have to check my daughter’s scalp for a suggestive birthmark when I give her a bath this evening.

I’ve been putting off writing this post, for reasons that will become clear later. For now, suffice to say, my head has not been in the right place.

They say that parenting changes you, but I’m not so sure that’s the case. I always figured it simply brought to the fore those qualities you already had lying dormant within you – self-sacrifice, responsibility, generosity, and what have you. Being a dad hasn’t made me who I am – it has simply shone a light on some of those hitherto undernourished and unappreciated aspects of my character and allowed them to flourish. For better and for worse.

I’ve mentioned many times before how parenting has brought out my paranoia, so much so, in fact, that it’s not worth repeating it here. I’ve also discussed how fatherhood has turned me into a crap dancer with a penchant for atrocious puns, but I’m pretty sure these things are normal.

Slightly more tragic was my wife’s revelation, a couple of weeks ago, that I have become rather boring.

Boring!? Surely not. I’m still young. I’m still energetic. I’m still…actually, she has a point. I have become a little old of late.

See, when you spend the better part of your day looking after a toddler, especially when you define your role as keeping her safe, you tend to become a little over-serious in your outlook. Couple that with being knackered all the time, and I invariably greet my wife’s ‘let’s go to the pub, let’s go to the park, let’s go to the shops, let’s go to the zoo, let’s go to Spain’ with ‘can we not and just say we did?’ Which, admittedly, isn’t the behaviour of the young, vibrant dad I set out to be.

So I have tried to soften a little. My wife Lizzie said she wanted me to be more juvenile, more playful, more fun – so I threw a glass of water over her. Apparently, this wasn’t exactly what she meant. Nor was pinging her bra-strap whenever her back is turned or hiding her breakfast/drink/phone every time she glances away. And shooting her in the back of the head with a Nerf gun was very much a bad idea.

But things seem to be a little better. There are more pillow fights and visits to soft play, less arguing about risk assessments and budgeting. That’s one of the compromises you have to make as a parent.

The other MASSIVE change I have noticed in myself as a result of fatherhood, and something that is affecting my life, is my level of sensitivity towards anything that connects parenting, children and pregnancy with suffering, pain, disappointment and death.

Perhaps because of my autism, I’ve always been more sensitive towards the suffering of animals than people. In fact, I used to get myself so upset over nature shows that I couldn’t watch them as a child and I avoid them as an adult, whereas I loved true crime – it didn’t matter how nasty or gruesome it was, it didn’t really affect me. I’ve read all about James Bulger, JonBenet Ramsay and the Lindbergh Baby. I even did my Masters dissertation on infanticide, researching over four-hundred newborn child murders in Victorian Hampshire without batting an eyelid.

But fatherhood does something to your sensitivities. I first noticed it when my wife was expecting. I decided to reread Moon Tiger by Penelope Lively, which I did for A-Level, and despite knowing for twenty years that there’s a miscarriage scene, despite never having been bothered by the miscarriage scene, I read the miscarriage scene and started to cry. Weird, I thought – it’s the woman who’s meant to get hormonal.

When my Izzie was born and placed in an incubator, and my wife Lizzie was haemorrhaging and having transfusions, I sought out the hospital’s chapel for some rest and reflection, despite not being at all religious. Inside they had a prayer tree, with prayers written on paper leaves and pinned to the branches. One simply had a name, a date two days previously, and two devastating, soul-destroying words: ‘born sleeping’. Let me tell you, it killed me.

Since then, every time I hear about a miscarriage or a still birth, I well up. But it has become worse as time’s gone on. The more I’ve grown into my role as father, the more afraid I’ve become at the prospect of losing my daughter, whether through illness or accident, the more sensitive I’ve become to the suffering of all children. And I don’t know if sad stories about children are in the ascendancy at the moment or if I just never noticed them before, but they seem to be everywhere.

I cried over Ben Needham. I cried over the little boy killed by a dog a few weeks ago. Standing behind the counter of the children’s hospice shop I work in, I cried at the pictures of children with tubes in their noses, despite having seen them hundreds of times before. I cried at photos of children bloodied and shell-shocked in Syria. I’ve cried, and I’ve cried, and I’ve cried.

And then two weeks ago I saw this picture, and all the other tears I’ve cried seemed as nothing [WARNING: DO NOT CLICK LINK IF SENSITIVE]. It is a photo of a little girl called Jessica Whelan who is dying of neuroblastoma, and instead of the usual pictures of cancer kids – visiting Disneyland, playing games, smiling and ‘being brave’ – it captures the reality of a terminally ill child. The pain, the sorrow, the indignity, the goddamned unfairness of it all. And since then, my emotions have been all over the place.

People say, ‘I can’t imagine what that must feel like for the parents,’ but the trouble is, as a father I can imagine it, and just imagining it is more pain than I can bear. But I can’t escape it because it’s in my head now. I lie awake in bed at night, wondering about the letters I’d write to my daughter if I was diagnosed with terminal cancer; I wonder how she’d cope if I wasn’t here; but more, I wonder how I’ll cope if she’s the one with the cancer, and how I’ll explain it to her, and how the world can be so fucking cruel.

The truth is, what we as parents, and what I as a father, have to learn, is that our children do not belong to us – they belong to the Universe. We are only borrowing them for a time. So we have to make the most of every day, build happy memories for however long we are gifted with the opportunity to do so, because it could all come crashing down in a heartbeat.

And in the meantime, I need to learn to stop holding on so tight, find a way to stop crying all the time, and work out how to grow a thicker skin, or else I’ll be an emotional wreck before the year is out.

If you want to know about the aetiology of the Winter Vomiting Bug – or stomach bug, norovirus, rotavirus, gastroenteritis, or whatever the hell else you might want to call it – then read on, for I am now an expert.

First, despite the name ‘Winter Vomiting Bug’, you need to be aware that it doesn’t limit itself to just one end of the body – the explosions can come from pretty much anywhere it chooses, and often both places at once. Also, it isn’t restricted to winter – it crept into our house in the spring, and returned to provide some entertainment in time for Halloween, which is really autumn. In fact, since the name ‘Winter Vomiting Bug’ is only a third accurate, it should really be called the ‘Anytime Puking Squits Bug’, because that’s exactly what it is.

What are the symptoms? As you can gather from the (new) name, it causes guts ache, vomiting and diarrhoea. In this current manifestation, the vomit is rather neat and tidy, taking the form of a solid mass wrapped in a transparent sac of phlegm – kind of like boil-in-the-bag fish, only with more carrots. And a real powerful aroma of fermented apples, like the cider bums that sit on park benches.

I know this because when my darling daughter started to vomit at 1am while sitting in the centre of the carpet, there was nothing in range to grab, so I had to catch it in my hands. This is one of the unexpected pleasures of parenthood. But she seemed instantly more comfortable in herself, so that’s a plus.

Meanwhile, the diarrhoea is – well, diarrhoea. There’s not a lot else to say. A slightly sweet, fruity bouquet, but otherwise exactly as you’d expect.

What is the disease progression? Within twelve hours (of catching vomit in your hands), you get a real bad case of stomach cramps, relieved by burps that taste of fermented apples (at which point, you go, ‘Oh crap, I’ve caught it!). Over the next few hours, the cider burps develop an aftertaste of bacon. Gradually, these burps become more frequent and lose the apple taste altogether, now reminding you of those little burnt bits on the bottom of fried eggs. And then, as it starts to feel as though you’ve swallowed a sea urchin shell that’s rolling around in your stomach, you realise you’re going to be sick, and that as soon as you have you’ll feel better, but it’s going to be a while yet.

What’s the incubation period? I have this down – 23 hours, 37 minutes. Because that is precisely how long it took between getting vomit on my hands to experiencing the pleasure for myself. It is a particularly violent form of retching – my wife Lizzie ran around in a panic screaming ‘you’re going to die, you’re going to die!’ – and it feels like someone is smacking you in the gut with a sledgehammer, but as soon as you’re done you feel as though you could run a marathon – albeit, a marathon with regular toilet stops as the other end remains a little unpredictable.

How long does it last? Now the good news: about a day. The vomiting/diarrhoea explosions are fairly concentrated into a period lasting between a few minutes to a few hours. It’s a long time coming, but once it hits and it’s over and done with, you feel much better. Admittedly, you wonder why you can’t remember being kicked in the stomach by an entire rugby team, but it’s much easier after the explosions than before. The fragile belly lingers for a few days after, and you’ll have plenty of loose stools, but eventually it fades.

Is it contagious? Oh God yes. My wife had it first, about two hours before my daughter, so I had to tend to both at the same time. I used anti-bacterial soap and scalding water every couple of minutes, especially after handling vomit and poop and every time when moving from one patient to the other, but I still managed to catch it.

What’s the long-term prognosis? An aversion to cider. Red skin on your hands. An intimate knowledge of the inside of your toilet bowl. And, if you’re anything like my daughter, a chesty cough and cold that leaves you snotty and spluttering and miserable for at least a week.

The other night she woke up screaming 21 times. Sixteen times I dragged myself out of bed, put her dummy back in, placed her on her belly, rubbed her back until she was soothed, and stayed with her until she was snoring again. Which, for the mathematicians among you, means a deficit of five. On those occasions, I lay abed in a soporific daze, battling to claw my way up to reality, unable to rise in the five or so minutes it took her to ‘self-soothe’ a.k.a. cough and scream herself to sleep.

So this, in a nutshell, is the Winter Vomiting Bug/Anytime Puking Squits Bug. If you know anyone who has it, avoid them like the plague, for they are carrying the plague – a plague of disgustingness you don’t want to unleash upon your family. Although, telling people you’re contagious is a great way to keep the neighbours from bothering you…